3 tips to help you beat the heat, even with myasthenia gravis
I hold off my symptoms with a combination of hydration, diet, and cooling
Hey, there! How’s the weather by you? Yeah, it’s a scorcher here, too!
No, this isn’t just small talk. If you look at forecast maps across the country right now, there are some crazy summer storms brewing. The temperatures have been above average across the nation (at least according to the weather app on my phone). Since my diagnosis of myasthenia gravis (MG), I’ve always wondered why our awareness month is at the top of summer when so many of us with MG struggle with heat intolerance.
When my symptoms flare due to the heat, it can be because my body temperature has gotten too high from exertion, the shower that I’ve taken was too far up on the Fahrenheit scale, or the temperature Mother Nature blessed us with for the day is more than this body can handle. Whatever the cause, I almost always experience eye drooping (ptosis), a hoarse voice, trouble eating anything with a density greater than watermelon, increased difficulty in breathing, and I’m much quicker to fatigue.
Over the years, I’ve discovered a few tricks through the input of others and trial and error of my own. I hope they’re helpful for you as well.
Tip No. 1: Hydrate, hydrate, hydrate
Maybe it’s because my husband is a personal trainer and nutrition coach, but hydration has been drilled into my head. Not only does it help me stave off nasty intravenous immunoglobulin side effects, but it also gives my body the resource it needs to beat the heat. Evaporative cooling from sweating is our body’s primary way of naturally cooling off. Not to mention, a glass of ice water just seems to taste better.
Tip No. 2: Cool eats = cool treats
I love watermelon. Watermelon is one of those things that tastes better cold, in my opinion. It’s low in calories, satisfies my sweet tooth, is high in water content and is easy to eat, even if I fail to beat the heat and start having difficulty eating. I try to stay away from things like milkshakes or ice cream smoothies with the candies (you know which ones I’m talking about). Dairy makes me more phlegmy, which doesn’t help. More phlegm leads to coughing, which leads to respiratory muscle weakness. Not good.
By consuming foods that are easy to eat and digest on a hot day, I’m helping my body by not making it work so hard to process complex foods. Fruit salads, sorbet or ice pops, cucumbers and light Italian dressing (or ranch if you prefer; no judgment here), and a salad with grilled chicken are my go-to foods. They’re all quick, easy to make, easy to eat, and help fuel my body in positive ways.
Tip No. 3: ‘Ice Ice Baby’
I have a cooling vest with a multitude of pockets along my back, side, abdomen, and chest for little ice packs. If being outside when the temperature is above 80 degrees F is inevitable, I use my cooling vest. You can make or buy the flexible gel ice packs for increased comfort.
Ice vests can be pricey (I was able to get mine through Veterans Affairs), so if you or someone you know can sew, find a vest or a flannel shirt, cut the sleeves off, and make one. That lets you customize it so it fits your body type, and you can put pockets for ice packs where it will be most beneficial. Most commercial ice vests out there were not made for someone like me, as I am, shall we say, well-endowed. I had to get creative to get the ice pack in the optimal place for it to work as it should.
Bonus tip
Switch your showers to evening. After a long day, indulge in a bit of self-care and use that shower chair (get one if you don’t have one) to sit in a nice, hot shower. The last few minutes of it, switch the water to a cooler temperature. Not only will you feel better because you’ve washed all the grime of the day away, but by bringing down your body temperature before you sleep, you may find that you sleep better as well.
Do you use any of these tips? How do you beat the heat with MG?
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
Kathleen Johnson
I would love any helpful ideas that help you cope physically and mentally with this disease . . I feel like I’m failing in every way